Happy Friday This week we caught up with Sherri who gave us some insight into what it is really like to live with Narcolepsy - a disorder that affects your ability to wake and sleep. Have you ever felt like there is not enough awareness around a condition that you're living with? Tell us in the comments below.
"I have Narcolepsy, so it's like living with constant REM intrusions, yet waking every day feeling like I didn't sleep at all, since we narcoleptics don't get much of the deep sleep stage that's required to make you feel rejuvenated after sleep.
👉 Even with medications, treatments, and even home remedies, every single day becomes increasingly challenging since it's almost like living with a continuous, and progressive sleep deprivation. With that being said:
💃 🛌 It is frustrating when people assume that I am just lazy, when before the narcolepsy got bad, I was the busiest, hardest working person I knew, and I would give ANYTHING to be that person again.
⛔️ I often avoid making plans with people, because I know that the guilt of not being able to keep them because of a sleep attack is a lot to bear.
🚶🏽♀️Often times, people make comments insinuating that I look like I’m drunk, so please be careful judging people, since you would also appear drunk if you'd been living with constant and progressive sleep deprivation, as well as cataplexy (that's common with Narcolepsy), and involves sudden loss of muscle tone, often for me, my knees suddenly buckling.
🤷🏻♀️ Every now and then, we do have a really good day. So when that does happen, believe that we will try to take full advantage of it and get everything done that we possibly can, even if that means trying to stay up all night to finish a project, amidst a few sleep attacks.
⏰ We often find ourselves running extremely late for everything, despite multiple attempts to prevent tardiness. A general consensus that I have observed amongst the narcoleptic population regarding this phenomenon is that because when we have nothing pressing to do, that is often when we are in full, slow, narcoleptic mode, and we will drag everything out. But when it comes to adrenaline/fight or flight, THAT'S when we can roll- so I think we subconsciously wait until that final moment when that place we have to go suddenly becomes fight or flight, because we know that's the only time we can optimally function.
❤️❤️ So, on behalf of narcoleptics, I humbly encourage you all to try to have more of an open mind regarding our treatment as people and as patients. I encourage you to try to learn more about Narcolepsy if you feel like you have been experiencing excessive daytime sleepiness (since that is one of the hallmark symptoms, and narcolepsy is so often undiagnosed and misdiagnosed), or if someone you know has the symptoms, or has Narcolepsy with or without cataplexy, because it is grossly misunderstood, both by the general public, as well as medical professionals."
Sherri has given us consent to share her story.
Stories on HealthUnlocked have an incredible way of raising awareness around certain conditions, as well as inspiring people who might be in the same situation as you. Would you like to share your health journey? Email me at firstname.lastname@example.org to learn more.